The following letter was sent to The Wall Street Journal, various local NH newspapers and legislators. In addition sent to Senator Sue Serino’s “Share your Lyme story” page: http://a.pgtb.me/L00vd8 Please feel free to share this with others. Lyme is not your average “Nuisance Disease” Lyme disease if not treated immediately can become life altering as we heard recently that singer Averil Livigne [1] was bedridden five months before obtaining a diagnosis. Amy Tan, [2] author of the book, “The Joy Luck Club” was severely affected neurologically and Duke University Professor Neil Spector [3] required a heart transplant after experiencing four years of undiagnosed-untreated Lyme disease. Spector’s book, “Gone in a Heartbeat” discusses the dismissive attitude of physician colleagues and importance of patient self advocacy. Real Housewives of Beverly Hills star, Yolanda Foster [4] reports losing her ability to read, write, or watch TV. Misdiagnosis is not uncommon as late stage Lyme patients are often ping-ponged through the medical community for years or decades as there is absolutely no medical training for the later stages of disease. Many patients do not recall a tick bite and the bulls-eye rash is not as common as the CDC claims. The State of Maine Dept of Health is reporting rash incidence under 50%. [5][6] [7] [8] The CDC recently reported three sudden cardiac deaths [9] [10] associated with Lyme Carditis where there were no warning signs of disease. Three seemingly healthy individuals dropped dead from heart failure. We have to ask the question, “How many seemingly healthy Lyme patients have donated blood?” Our blood supply is not screened for Lyme disease. In August of 2012 the CDC announced that the number of Lyme disease cases could be off by a factor of ten adjusting the number to 300,000 [11] new cases annually. That makes Lyme disease almost twice as common as breast cancer and six times more common than HIV/AIDS so where are the Public Service Announcements? Lyme disease has been portrayed by the CDC and Infectious Diseases Society of America as little more than a “nuisance” disease; hard to catch and easily treated. Lyme disease was pigeonholed into its current status by the two principal investigators [12] of the previous Lyme disease vaccines; SmithKlineBeecham's LymeRix and Connaught's vaccine (which never made it to market) as these investigators conceptualized a disease that would enable vaccine development. A preventive vaccine for Lyme disease would not satisfy the FDA if a chronic persistent infection and seronegative disease exist. The lead author of one-size-fits-all Lyme treatment guideline (which matches the conceptualized disease) was the principle investigator of Connaught's Lyme vaccine. This is a flagrant conflict of interest! Have we been dealing with an antibiotic resistant superbug purposely concealed to promote vaccine development? If that is the case then post-treatment Lyme disease syndrome is simply a fabricated medical condition disguising treatment failure. Information originating from the CDC/IDSA regarding Lyme disease and the conflicting patient stories of total disability gives the reader the impression that this disease has been grossly mismanaged from the beginning as this silent worldwide epidemic rages out of control. Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF (28,500 signatures and growing) https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf Carl Tuttle Hudson, NH Website: New Hampshire Lyme Misdiagnosis http://home.comcast.net/~runagain/site/?/home/ Letter to the Editor, The Lancet Infectious Diseases Published May 2012 http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(12)70054-3/fulltext The Tuttle family was featured on New Hampshire Chronicle’s “Living with Lyme” with the program archived on their site in six small segments for viewing on the computer Part 1, Part 2, Part 3, Part 4, Part 5, Part 6 REFERENCES [1] Averil Lavine: Avril Lavigne Opens Up About Her Health Crisis: 'I Was Bedridden for 5 Months' http://www.people.com/article/avril-lavigne-lyme-disease-bedridden [2] Amy Tan: SLyme Disease: How A Speck Changed My Life Forever http://www.humanthology.com/lyme-disease/2014/9/15/slyme-disease-how-a-speck-changed-my-life-forever [3] Professor Neil Spector: Duke physician uses near-death experience to encourage patient self-advocacy http://www.dukechronicle.com/articles/2015/05/28/duke-physician-uses-near-death-experience-encourage-patient-self-advocacy#.VYlYnxtViko [4] Yolanda Foster: Yolanda Foster on Lyme Disease: I've Lost Ability to Read, Write, Watch TV http://www.usmagazine.com/celebrity-news/news/yolanda-foster-on-lyme-disease-ive-lost-ability-to-read-write-2015191 [5] Report to Maine Legislature Lyme Disease February 2009 http://www.maine.gov/dhhs/reports/lymereport.pdf -- 2009, 59% [6] Report to Maine Legislature Lyme Disease February 2010 http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/lyme-legislature-2010.pdf -- 2010, 43% [7] Report to Maine Legislature Lyme Disease February 2011 http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/2011-lyme-legislature.pdf -- 2011, 42% [8] Report to Maine Legislature Lyme Disease February 2012 http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/2012-lyme-legislature.pdf -- 2012, 49% [9] CDC Case Study #1: Three Sudden Cardiac Deaths Associated with Lyme Carditis:http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm?s_cid=mm6249a1_w [10]CDC Case Study #2: A case report of a 17-year old male with fatal Lyme carditis http://www.cardiovascularpathology.com/article/S1054-8807(15)00025-3/abstract?rss=yes [11] 300,000 new Lyme cases: CDC provides estimate of Americans diagnosed with Lyme disease each year http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html [12] Lyme Vaccines: CDC Webinar: Vaccines for Lyme Disease – Past, Present, and Future https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/11032281